Teen with rare form of epilepsy becomes advocate

Monday

Jun 4, 2012 at 12:01 AM

FRANCISCO VARA-ORTA

SAN ANTONIO - After four life-risking surgeries as a child to treat her epilepsy, Morgan Carey decided to lobby lawmakers to raise awareness about her disorder, teach students what to do if someone around them has a seizure, and adopt a diet and exercise routine to stay healthy.

She's 14.

Morgan was diagnosed with epilepsy - a brain disorder in which a person has repeated seizures over time - at the age of 8. She suffers from one of its rarest forms. Her seizures are not violent and she doesn't convulse, but they are constant - day and night- and don't respond to medication. Only about 100 such cases have been documented in the world.

But that's not the only rare thing about the auburn-haired teenager: She is one of 44 students in the country selected by the Epilepsy Foundation to be ambassadors on the topic and attended a workshop in Washington D.C. last month to learn advocacy outreach.

"If you have a pulse, you have a purpose," Morgan said in a recent interview. "Before my surgery, (at age 12), I don't think I was a very good person. I thought everything was about me. It really opened my eyes to do something bigger than myself."

She underwent a fifth surgery a few months ago, to install a device in her chest that controls the seizures, because the previous operations failed to stop them. It can be reset by swiping a magnet on her upper torso.

"It's never going to go away, but the worst thing about it is my limitations," Morgan said - she can no longer play volleyball or the French horn in the marching band at Reagan High School. "But otherwise, I have a very normal life."

And that's the point Morgan hopes to get across in her advocacy for people with epilepsy, using humor to express herself with the personality of a bubbly comedienne.

During a 30-minute meeting with U.S. Rep. Francisco "Quico" Canseco, R-San Antonio, in his office last month to urge him to support a resolution to raise awareness on epilepsy, Morgan stuck to her message but charmed her listeners describing her recent appearance in a river parade.

"I enjoyed that way too much," Morgan said. "Just being on a float on the river waving to people. If I could do that every day ... I'd travel on a float telling everyone about epilepsy."

More than 400,000 Texans have epilepsy, about 30,000 of them San Antonians, according to the foundation. The disorder is caused by abnormal brain activity. When most think of epilepsy, what comes to mind are "grand mal" seizures, which cause violent convulsions.

But Morgan's form is more subtle, blurring her vision, causing memory loss and a sense of disorientation. Her body can start to feel like it's moving when it's not. It started one day when she was in the second grade. There is no known cure.

There wasn't a history of epilepsy in the family, so she had to navigate medications and treatments for years. At 12, Morgan underwent four brain surgeries within 14 days. She spent her birthday in the hospital. She has forgotten some of that period, but her mother, Jolene Driver, hasn't.

"The doctors had never seen anything like it, and at one point after one of the surgeries, she had the worst pain and the seizure activity wouldn't stop," Driver said, tearing up. "Morgan turned to me and said, 'I am sorry Mom, I tried, just make it stop. Let me go to sleep. Just let me go.'"

The fourth operation helped mitigate the condition, for a while, and the device implanted in her chest last winter controls it better. "I have found meaning in life. I must be here for a reason to survive that," Morgan said. "It's about the climb."

The family got involved with the Epilepsy Foundation by participating in its 5K run. Officials were impressed with how open Morgan and her family were about their struggles.

This spring, the foundation selected Morgan for "her exceptional resilience and a positive attitude" to be a part of its Kids Speak Up! Program, which trains teens with epilepsy to become advocates in their communities.

"I think she can set an example for many teenagers with or without epilepsy," said her doctor, Gretchen Von Allmen, a pediatric neurologist at The University of Texas Health Science Center at Houston. "She inspires me."

Youth ambassadors are considered an increasingly effective tool to attract attention to the topic, especially those considered taboo or under-reported.

"You're a brave, brave lady," Canseco told Morgan in their April meeting. He said he was leaning toward becoming the first Texas congressman to support the RAISE resolution, also known as H.R. 298, which asks for better coordination of existing epilepsy education programs but no additional government funding.

This month, Morgan taught a health class about epilepsy at Reagan, answering questions from classmates who seemed astonished to learn not to call an ambulance until someone's seizure lasts more than 5 minutes. Morgan said her peers generally have been supportive. An absence of bullying has helped, she said - she knows other students face a social stigma.

Morgan has her daily struggles. On Friday, she had to go to Houston for treatment again after suddenly falling ill.

She is a good A-B student, but sometimes her memory problems make her forget something she just learned. Her teachers work with her condition, but the school doesn't consider her a special education student. The state leaves the decision to local districts, which frustrates parents of children with epilepsy.

Morgan plans to get a college degree and become a motivational speaker on living with epilepsy. While there's always a danger that her condition could worsen, she said she's trying to find her way in the world.

Despite her apparent poise in her new role, Morgan always asks someone next to her how she did.

"I was so nervous. I just hope I'm doing a good job," she said.

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